Monday, April 1, 2013

You know when you're cleaning your house, and you're sweating, you've filled up a couple garbage bags and done 4 loads of laundry. But then you step back and look around, and you can't even see a difference? Yeah, I think that's what autism is like to us moms and dads. (And teachers, doctors, grandparents, and pretty much everyone who is emotionally invested in the child.) You work so hard every day, with no breaks. You feel so accomplished when you put your child to bed, and then you wake up the next morning, and he looks at you but he's not really looking at you – he's looking through you.

The five minute mess. A task achievable by any toddler

James and his animals and books

Why does any of that matter when it comes to James missing me? At the end of February I went to visit my parents in Texas for 10 days, when I came back and James saw me there was... nothing. He didn't smile, say my name, hug me, or even reach for me. It was in the morning, and I was getting him out of bed. He's a pretty happy kid in the morning. He sits in his bed reading his books or talking to himself or his toys. Usually when I go in there to get him, he stands up and says, "Hi". Nope. Nothing. We walked out into our big room, and he went right for Chris, the lovesac, and the blanket. So much for missing me.

The more I think about it the harder it is. If he doesn't care that I'm back does that mean that he didn't care that I was gone? I was so worried because 10 days is a really long time. I joked that I was more worried about Chris missing me than James. I wish I had been wrong. (I am, however, very lucky to have a husband who loves me so much.)

When I give James big hugs and whisper in his ear how much I love him, I can't help but wonder if he even knows what "I love you" means. Yes, he will choose me over someone he doesn't know and pick my arms to comfort him, but how much of that is because I am what he knows, and how much of that is joy and warmth created inside him because he knows he's mine?

I love you buddy, I promise the Zoo and the Carousel aren't scary

Here's the part where everyone assures me that he loves me and knows that I'm his momma. Yes, I know that. I'm sure if something happens to me he'll always know, but right now, he won't miss me. He has that special connection with Lily but no one else (there was an instance when Chris, Lily and me went to Idaho for a night and he wandered around calling her name and looking for her). Once something is gone, he'll notice that it is absent, he'll ask about it, but the feeling of missing something is something that he's missing.

Ahhh! Mommy put us in matching shirts!

Lily is making sure that Daddy's hair is perfect

The day before we left Texas to come back to Utah, Lily was in the car with my mom and two of my sisters, and she told them that she misses her family – her daddy and her brother. When we finally got off the plane in Utah and walked out to baggage claim, she did what every little girl who adores her daddy would do, she ran across the room with her arms out and her little backpack bouncing from side to side screaming "Daddy!" and jumped into his arms (one of those things where the people who saw what happened choked up and wanted to hug their daddy).

How I so, so wish that James would do that for Chris, instead of someone carrying James up to Chris, pointing to Chris, and saying, "James, who's that? James, that's Daddy. Did you miss Daddy? Daddy missed you!" James would lean into Chris' arms, and once his memory was jogged, he'd probably give him a hug, but definitely not the "Ohmigosh it's Santa Claus!!!" type reaction that makes the whole room smile.

Playing on tablets

My in-laws told me he was punishing me because I left him for 10 days. I said it was an autism thing. I asked our ABA program director, and he said it's an autism thing.

There is a part of me that didn't mind that he didn't miss me. If my mom died all my siblings, me, my dad, her grandbabies, and her animals would all be devastated. I would go so far as to say that some of them would take years to recover, if they recovered at all. It's the same with Chris' mom. Everyone in her life is so in love with her that the thought of losing her is something that no one around her wants to talk, or even think, about. I don't know what it's like for a 3-year-old to lose a mom, but I do know that Lily would remember me and miss me and have those hard moments in her life, and James wouldn't.

Grandma Grawe (my mom) reading to
James

Grandma Robin and Lily
(this is Chris' mom)

James not missing me made me feeling less guilty for feeling like those 10 days were some of the best 10 days of my life. I scooped horse, cow, and goat poop, got kicked by a cow, built a goat birthing pen, vacuumed the lawn, helped move heavy bags of animal feed, milked a cow and some goats, helped de-horn a goat, almost got eaten by a horse, held a watermelon piglet (half pig-half wild hog), helped treat bloat in a cow (twice), and so many other things that let me get dirty and forget it all (except for the texts, phone calls, and e-mails about therapy stuff). It was wonderful, and I can't wait to go back. I'd go today if I could (and I'm pretty sure Lily feels the same way).

What I hate the most is the angry/sad part of me that was thinking (and I was excited), "I wonder if he's going to cry and hug me so tight it hurts and smile and laugh and jump up and down when he sees me." I was wrong. I should have known better. I think I was thinking those things because I was hoping for some sort of validation, some sort of reward, for all the hard work we've been putting in and have put in so far. I was wrong, but now I know how high to make my expectations. And someday, when he sees me and screams in delight, it'll be that much better.

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The Reader's Digest Bio of Our Family

The Heuer Family, April 2012

I'm Ginger and this is our family. Chris, age 29, me, age 29, and our twins Lily and James, age 4. I thought it was weird to have a blog titled "The Heuer Family" but not tell anyone who we are.

Chris and I met in 2003 in the BYU Marching Band, started dating in 2004 and got married in 2007. About 2 years later we got our puppy Gizmo and about a year after that we had our twins, Lily and James. Lily is a family name on Chris' side (plus I've always liked the name), and James is Chris' middle name (so their names have nothing to do with Harry Potter). We recently got a puppy named Tonka for Lily. She takes great care of him and he is her pride and joy.

Chris graduated from BYU in April 2013 with a degree in Computer Science. I stay home with the twins trying not to lose my mind running a therapy program.

We live in Chris' parents' basement in Utah- Utah being a state that doesn't require insurance companies to cover autism treatments, it leaves all of James' therapy to be paid for on our own. We don't know what's going to happen next week but we're trying our hardest to find resources to pay for it.

Right now, we're trucking along, working our hardest to give James what he needs and make sure Lily feels important (she takes her responsibilities as a puppy mommy very seriously). I can't say how often I'll update, blogs always seem so touchy-feely to me and I am so not like that. But I'll try.